Tuesday, January 31, 2012

Every Child Matters - Guest Blog From Eilidh's Mummy

Every child is a gift, precious and loved, and deserves the best future possible.

So why are the Government proposing to neglect them?

I am ashamed to admit this but I will: I know very little about the Welfare Reform Bill. I know a bit about DLA;I know even less about the Disability Additions.

I have a disabled child but am rather ignorant of the huge changes that the Government are trying to make to the benefits system despite the fact that it will have a monumental effect on families with children just like daughter. I am intelligent, well read and a health care professional so how can I be so blind to these changes?

For the last twenty months I have been coming to terms with the fact that my child is disabled; that she is a wheelchair user, and that she will need additional support throughout her life. I have been concentrating on living day-to-day, coping with the effect that her disability has had on our family and worrying about what the future holds for her. Yes, we applied for Disability Living Allowance (The DLA “is a benefit that provides a cash contribution towards the extra cost needs arising from an impairment or health condition. DLA is a non-means tested benefit paid regardless of employment status”), but it was done in a haze and applied for because we were told that we were entitled to it .Due to my daughter's condition we received the higher rate of payment. The money goes into our account every month and gets eaten up by childcare costs. Tomorrow we start to receive the Mobility element of the DLA and this will contribute to our wheelchair accessible van (WAV) which will allows my daughter even more independence as we will be able to take her power wheelchair out more often. I have not thought about our benefits much more than the freedom that they provide us with.

I have followedKaliya FranklinandSue Marshand their dedicated supporters, wholly supporting their tireless work to fight the Government and bring about aResponsible Reform: but I have supported them in spirit only(I am ashamed to admit. I am not a true Spartan), too caught up in the moment, too tired to read and research and speak out. And now it is the eleventh hour and I feel that the cart horse has bolted and that I have let the disabled community down, that I have abandoned families living with disabled children – children just like my daughter.

So what does this actually mean for families with disabled children? In brief:

It is proposed that the Disability Additions Payments will be dropped byover 50%. Families with disabled children may lose out on up to£1,400per year – this totals more than£22,000over the childhood of their child. Approximately170,000families throughout the UK will be affected should these cuts go ahead andEvery Disabled Child Matters (EDCM)estimates approximately63 per centof all future disabled children will also lose out as a result of this policy.

Personal Independence Payments will replace the DLA for those of working age and is aimed at streamlining the system while makingcuts of 20%. These cuts will affect in the region of half a million people. At this time, and as of 2013, the PIP will not be extended to disabled children until such a time that they can prove that “it provides a fairer, more objective and more transparent alternative”. The cuts will not apply to those under 16 but these children will become adults: it is our responsibility to protect their future.

I do not know what the future holds for my daughter or for my family: I do know that the future of others in the same predicament, living with Spinal Muscular Atrophy and other disabilities, will be less bright and less supported if we don’t make ourselves heard. The House of Lords will soon vote on amendments opposing the proposed cuts to disability additions for family’s with disabled children; they will vote on amendments to preserve the DLA; they will vote to change the lives of thousands of disabled people throughout the UK; they will damage any hope that these families have of their children living independent lives.

So please, listen... We don’t have a lot of time; let social media work its wonders: don’t let our disabled children be neglected by the Government – every child matters and they all deserve as bright a future as we can give them. Stand up, stamp your feet, shout, roar and tweet – our children deserve the best that we can give them. Our children, adults of the future, need you!

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